Wednesday, June 27, 2012

Why I Don't Want Autism Speaks Speaking For Me

It has been mentioned to me that my position on fighting/curing autism in my "I'm Autistic" post could probably use some clarification.

My words on the subject were as follows:


"On a similar note, there are autism research organizations that talk about "fighting" and "curing" autism, which I find extremely uncomfortable.  My AS is as much a part of me as my love of writing or my hair color.  The idea of eliminating autism spectrum disorders is essentially the idea of eliminating the people who have them.  I don't want a world without us; I want a world in which society accommodates and understands us,  and helps us to thrive in a mostly neurotypical world without trying to exterminate what we are.  So please don't send me links to Autism Speaks or talk to me about raising awareness so a cure can be found."

Of course, I am what they call high-functioning.  I can communicate verbally.  If I feel pain, I can go to a doctor and clearly state where it hurts, rather than suffer in silence and possibly even die as a result of my inability to express myself.  But what about those who can't speak?  What about those who are low-functioning and can't advocate for themselves?  Shouldn't I be happy that there are groups like Autism Speaks fighting to help them, to break them out of the prison their own bodies have built?

No.

Or, to be less general, I am not happy or thankful for Autism Speaks.  There are organizations that I am proud to support, such as the Autistic Self Advocacy Network or the Academic Autism Spectrum Partnership in Research and Education.  I am not against all advocacy and education regarding autism spectrum disorders.  But I am against Autism Speaks and their method of "advocacy." and I always will be.

Here's why.

For starters, that's Autism Speaks' budget as of 2010.  Notice that only four percent goes to Family Services, i.e. the programs that would actually improve the quality of life for an autistic person.  The majority of the budget goes into research, and the majority of that research is devoted to things such as finding a cause for autism or exploring possibilities for preventing autism, such as prenatal testing.  The focus of their research is not to find educational strategies or therapies to help those who can't communicate in the neurotypical sense.  Their focus is on eliminating autistic people.

Also of note: Using funds to help families is not a priority for Autism Speaks, yet their rates of executive pay sometimes exceed $400,000 annually.  Charity Navigator only rates Autism Speaks' financial health at two out of four.  And Autism Speaks' fundraising expenses exceed their spending on most of their other programs.  If you're thinking, "So?  Fundraising helps autistics and raises awareness," well...

Autism Speaks has some of the most horrifically offensive fundraising and advertising tactics of anything ever.  They use scare tactics and threatening language to demonize autism.  In one infamous and now pulled ad, "I Am Autism," Autism Speaks compared autism to pediatric AIDS and gave us gems such as

"I am autism.  I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.  I know where you live.  And guess what? I live there too.  I hover around all of you."
and
"I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.  I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?  And the truth is, I am still winning, and you are scared. And you should be."
among others.

Autism Speaks loves to perpetuate stereotypes that autistic people are completely helpless, and a burden on society.  They display autistics as an anomaly that needs to be eliminated.  They prey on parents' fears and exacerbate them in the hopes of gaining money.  In a documentary created by Autism Speaks, families with autistic children featured in the film were told to take their children off of therapy during the filming, to ensure that everyone watching would see what a living hell the families' lives were.

Not a single member of the Autism Speaks Board of Directors has an autism spectrum disorder.  The organization is made up of neurotypical people, imposing their own standards of normalcy and healthiness onto a community that they are not a part of, and that often speaks against them.


This is not the norm for disability activism.  Most disability advocacy organizations and charities include those with the disability in question in their decision-making and leadership processes.  But not Autism Speaks.

Still, what about the low-functioning autistics?  The ones that can't communicate?  Don't they need groups like Autism Speaks, when all the higher functioning people on the spectrum are busy arguing that they don't need a cure or advocacy organizations?  Aren't their struggles being ignored?

First of all, people can communicate in non-verbal ways.   Groups like Autism Speaks ignore this, because they're too busy trying to eliminate autism rather than help those on the spectrum function in a mostly neurotypical world, which makes it even harder for these people to communicate clearly.  And it makes them feel broken and useless.  As a Tumblr poster, the-goblin-king, stated, when responding to another poster expressing pity for her brother, who was "stolen" by autism:

"Please, I hope you listen: People can communicate in non-verbal ways. Verbal communication isn’t the only communication, and it is not the superior way of communicating.
I was non-verbal throughout childhood. People felt sorry for me. Family members felt sad for me, people just like you.  They felt I was stolen, felt I was less of a person because I could not voice my thoughts like they could.
At first, I was angry at myself. I felt broken. To this day, I still feel broken sometimes, and you know why? Society, for the most part, makes me feel this way. In society, I am something to be pitied, I am something to be ridiculed, I am something that others have to defend, never myself. I am one of the many adults who were “stolen” by autism as a child, from birth.
Don’t feel sad for him. Autistic people don’t need pity. I don’t need pity, and I’m sure your brother does not need pity. He’s not the problem here. The way we, the supposedly broken, stolen people, are viewed, are stereotyped, that is the problem. The way we are seen as a burden on not just our families, but the entire state and nation, that is the problem. Your brother is a person, someone deserving of love, understanding, and acceptance, not pity."

And this is why I can never support Autism Speaks, or any such organization or individual who ignores what the ASD community, even the low-functioning members of that community, really wants in favor of eliminating us from the future.  I will never fight or advocate for a cure, just understanding and assistance, which Autism Speaks completely lacks.

Tuesday, June 26, 2012

The Day I Learned I Was Doctor Doom


If asked to identify my geekery in terms of the big two comic companies, I would say I'm a DC.

That's not to say that I dislike Marvel, their characters, or their stories.  I fell in love with Marvel Avengers after reading one page.  I love Iron Man and Captain America, I never cease to be entertained by Deadpool, I like Cable and the X-Men and I'm a huge fan of most Marvel movies.  It's just that I have a limited amount of money to spend on comics each week and DC happens to have all of my most beloved characters.  If it were Marvel producing Batman, Wonder Woman, Batgirl, The Birds of Prey, etc., I'd be buying their books each week.

But when I first got into comics, a couple of years ago, I wasn't familiar with most Marvel characters.  I grew up watching Superman and Batman cartoons, and the Justice League.  I missed Spider-Man and the original X-Men cartoon.  I did see some X-Men Evolution as I got older, but I didn't know much about Marvel outside of Xavier's School for Gifted Youngsters.  As I delved further into comic culture, and as one of my best friends became an Avengers fanatic, I learned more, about both the Ultimate Universe and 616.

The best day in terms of Marvel-lore, however, was the day I learned about Doctor Doom.

I was in the lounge of my dorm, taking an online quiz to determine which comic book super villain I most resembled.  I was less than thrilled at first when Doctor Doom's image appeared on my results page.  I was only familiar with him as the lackluster villain of the lackluster Fantastic Four movie.  But my potential disappointment was cut short by my Marvel fan friend going into hysterics beside me.

I asked what was so funny, half-expecting to hear that Doom was a terrible excuse for a super villain, so any dreams I may have had for conquering the planet were for naught.  Instead, the answer was "You really would be Doctor Doom.  You're just like him."


I have a funny way of relating to super villains, as I eventually plan to discuss whenever I have the time to devote a week's worth of posts to my favorite antagonists across various forms of media.  I tend to love either magnificent bastard villains who have a plan and an evil speech ready for every occasion, or ridiculous Team Rocket-style bad guys who get foiled by their own absurdity week after week.  And Doctor Doom, king of Latveria and arguably the smartest man alive, just happened to fill both of those requirements.


There's really no moral or lesson to this story, unlike my last blog post about Batgirl.  Being told Doom was my villainous counterpart didn't lead me to any great revelations about myself or the comic industry.  It just led me to google him and think, "Huh, this guy is pretty cool."  I could discuss how Doctor Doom was my gateway into Marvel, I suppose, or talk about how even violent despots can be relate-able characters, but really, I just love Doctor Doom and wanted an excuse to post pictures of him and talk about how great he is.  And in the end, isn't that reason enough for a post?

Thank you, Marvel.

Thursday, June 21, 2012

"You Were Always Meant to be Batgirl, Barbara."

Until yesterday, I had a Tumblr.*

Batgirl isn't afraid to show a hero questioning herself.
Granted, it hadn't seen much mileage; I had only created my account the week before.  I had always shied away from creating a Tumblr, even while reading the blogs of friends or artists that I greatly admire, such as Gail Simone.  My hesitation was simple: I had seen vicious arguments erupt within fandoms, brutal personal attacks, and even death threats lobbied at creators.  And I know myself well enough to know that I lack the emotional stamina to handle that sort of drama.

When something holds my interest, be it Harry Potter, Yu-Gi-Oh!, manga, or comics, it holds so tightly that it's hard for me to tell where I end and my hobbies begin.  Thanks to Asperger's, or maybe thanks to growing up with only a handful of friends that weren't fictional characters, my interests are more than just pass times.  I could write scholarly essays on all symbolism I've pulled out of throwaway lines from The Dark Knight.  When I was still in college, I would shoehorn comic references into any paper or assignment I could (thank you, Jason, for not only accepting but enjoying my philosophical essays on Batman and Superman).  It's difficult for me to hear criticism of my interests sometimes, because so often that criticism feels like an attack on me, too.

But eventually, I caved.  My craving to be able to hold conversations with the amazing people on Tumblr outweighed my trepidations.  I steeled myself for any tomfoolery to come, and I made an account, following only those I was sure I would enjoy and learn from.  And all went well for about a week.

And then your coffin begins to leak.

Last night, I checked my dashboard and found a reblogged picture set of Barbara Gordon, my all time favorite DC character, as Oracle, a representation I love just as fiercely as the current Batgirl.  I was admiring the images of the badass redhead until one of the comments quoted below it caught my eye: "#not meant to be just Batgirl kthnxbai."  And in my sleep-deprived state - it was well past midnight - I misread it, catching only:

"#not meant to be Batgirl kthnxbai."

And that was the end of my relationship with Tumblr.

An overreaction on my part, to be sure, but given all the ire I've seen directed at Gail Simone's Batgirl series, what I thought I'd read became the straw that broke the camel's back.  Ever since the series started, back in September, I've seen a contingent of readers seemingly determined to find fault with each issue.  "Batgirl shouldn't be so weak," the detractors argue.  "She shouldn't be hesitant.  She shouldn't dwell so much on The Killing Joke; I'm sick of hearing about her being fridged.  This isn't the real Barbara Gordon.  DCNu ruins everything."


If people dislike the current Batgirl series, that's fine.  Far be it from me to crown myself Queen of Heaven and announce that it's not okay to dislike what I like.  I understand the debate about restoring Barbara's mobility; I still can't work out exactly how I feel on the decision myself.  I understand not liking Batgirl.

But with that said, I still feel that the previous reasons listed for dismissing the series are complete and utter crap.

"The bullet never beat me."
One of the greatest things about Oracle - and there are many great things to choose from - is how inspiring and relate-able a character she is.  She suffered a terrible trauma and, what's worse, her tormentor considered her assault a mere footnote in his day.  But that never stopped her.  Instead, Barbara took all her awesomeness and applied it in a new direction, kicking ass, taking names, and letting everyone know she would never give up.  Oracle is an inspiration to thousands of readers, myself included.

But Barbara as the New 52 Batgirl is every bit as much an inspiration to me.  And the reason she's so inspiring is because of what others dismiss as weakness.

To explain why Babs-as-Batgirl holds such a special place in my heart, I need to give a brief bit of back story, both for her and for myself.  In the current comics, Barbara was paralyzed for three years before a spinal implant gave her renewed use of her legs.  Reclaiming the mantle of Batgirl, she struggles with post-traumatic stress disorder from her assault, as well as survivor's guilt for regaining what so many still lack.  She questions if she is really helping the city as Batgirl, and in her civilian life, she is searching for a job and trying to figure out her place in the world.

The Batgirl series started at the beginning of my senior year of college.  I spent months fruitlessly job-searching - I didn't find a job until yesterday, nearly a year after I began sending out resumes - and struggling with depression.  I would lay awake in bed at night, berating and abusing myself for my feelings.  How dare I be sad?  What did I have to be depressed about?  There are people starving, you know.  Here I was in the first world, going to college and having health insurance.  Why should I deserve all of this?  Someone else should take my place, someone who would appreciate it instead of crying herself to sleep.

Things got worse as graduation approached.  I didn't know how I could survive in the real world.  Forget finding a job - how was I supposed to fit into society?  I've always been at the bottom of the pecking order.  I've always been the girl people laugh at.  I'm the one who got her school picture defaced in Photoshop, who got asked to dances just so boys could laugh at me when I took them seriously and accepted.  And I was terrified that the career world would be just as bad.  As May approached, I was prone to sobbing and cutting.  I gave far too much consideration to seriously injuring myself just to get away from my reality.  If I were in a hospital, after all, I would be sequestered, safe, more concerned with making it through the day  alive than holding a job and fitting in and so many other impossible things.

Cliche as it sounds, Batgirl saved me.  Month to month, twenty-two pages worth of another depressed redhead struggling from day to day gave me the strength to keep going.  It meant the world to me to see a hero who didn't have all the answers.  Who was depressed and traumatized and full of self-doubt.  Who wanted to move on but was haunted by her past.  Who questioned how to fit in and how to make a difference.  Who had an estranged parent she didn't know how to deal with.  Batgirl is as if someone were showing me my own life, a few months ahead of me.  And watching Batgirl try to pull herself out of the same quicksand I've been buried in gave me the push I needed to make it through the day.

In the sixth issue of Batgirl, my favorite issue of the comic so far, Barbara rescued Bruce Wayne, who was under mind control from the villain of the issue.  Bruce thanked her, hugged her, and whispered in her ear, "You were always meant to be Batgirl, Barbara."


The amount of debate sparked by that line was astounding.  Some found it insulting to the other ladies who have borne the Batgirl mantle in comic history, namely Cassandra Cain and Stephanie Brown.  Some found it dismissive of Oracle, or infantalizing, reducing a grown woman to a girl and a sidekick.

But that one sentence brought me to tears.  It felt as if I were the one getting the hug, like one of my favorite heroes and my favorite author were reaching through the page and saying, You matter.  Don't doubt yourself, you can make it through this.  Sometimes, we need to hear the right thing to keep on going.  And Batgirl always offers exactly what I need to hear.  "Um, wow?" was Barbara's response to her mentor's encouragement.  "I feel like I could fight lions."  And so did I.

Things are better now.  I'm still depressed, still terrified at the thought of starting a career, and I'm still haunted by painful memories I can't seem to shake.  But I am able to hold on from day to day.  And I can honestly say, without a hint of melodrama or exaggeration, that Batgirl is what helped me to hold on when I was too afraid and self-hating to speak.  And she still helps me now.  Batgirl, with all her self-doubt, her fear, her emotional baggage.  And that's why misreading a post as "not meant to be Batgirl" is enough to make me delete an account.  That's why I can't wrap my head around criticism of the series calling Barbara too whiny.

That's why I will forever love the DC relaunch and Gail Simone for giving me the story I needed most, right when I needed it.  Batgirl saved my life, and for me, she was always meant to be Batgirl as well as Oracle.  She will always be an inspiration, no matter what.

*EDIT: Since I deleted my Tumblr due to a misunderstanding, I've set it back up.  You can find me on Tumblr as lauralot89.

Tuesday, June 19, 2012

"In My Day, We Didn't Need All These Labels"

Ah, the good old days.  The air was clean, the economy salvageable, and we didn't need all these newfangled labels that the social outcasts of the present invent every time they speak.

"Why do you need a label?" is a senseless argument often brought up to dismiss someone's identity.  I see it all the time in reference to asexuals. "So you don't screw.  So what?  Why try and make it an orientation?" Apparently these people feel that having a name for a major aspect of yourself and a term to search to find others who feel the same way is somehow absurd.

But lately, my online focus has been autism spectrum disorders, not asexuality.  And in searching for a community to discuss and further understand my Asperger's syndrome, I have also found the less than pleasant contingent of society that finds ASD overblown, over-diagnosed, and generally an excuse for lazy parents to let their children run amok.  "Kids were just quirky and bratty back in my day," the argument goes.  "We didn't need labels or special classes or aides."

I didn't receive a diagnosis of Asperger's until the age of 22.  I grew up without assistance and without a label to help me understand why I didn't relate to my classmates.  Growing up, I was told that I was bratty and immature.  That I acted strange because I wanted attention and I wanted people to think I was special.  Once I finally received a label, I thought those days were over.  Finally, I understood the aspect of myself I had never had a name for.  Finally, I could find others like me and learn their methods of coping with the world around them.

I never thought that my label would give some even more cause to tell me that I just wanted to be "special."  I didn't expect that recognized signs of Asperger's would be dismissed as "quirkiness."

So to those who feel that I'm acting out because I want the world to notice me, I would like to share my life's story.

I have always had a massive vocabulary, even as a toddler.  Despite this, well into my teenage years, my response to things that angered or upset me was to sob and scream and lash out at anything in sight.  I knew so many words, but I couldn't use any of them to describe what I was feeling or what I needed to calm down.  I felt isolated within my own body, and I often cut and scratched myself because I was so angry that I couldn't communicate.  Even I couldn't understand why I had such intense and painful emotions, and so often.  I hated myself for it.

My parents sent me to time out.  They grounded me.  They spanked and yelled, removed privileges, sent me to the school counselor, did everything within their power to try and make me act like a normal person.  I have vivid and suffocating memories of being held down while I screamed and kicked.  My parents were far from the lazy, responsibility-shirking adults of skeptic lore.  I can only imagine how hopeless and exhausted they must have felt from day after day of dealing with me.

Like many on the autism spectrum, I am terribly uncoordinated and have poor fine motor skills.  My handwriting was completely illegible until the fifth grade, when I finally gained enough control to write clearly.  When my mother tried to teach me to write, she gave up and let me print letters the way I wanted, rather than the standard and correct way, because I would throw uncontrollable fits if she tried to correct me.  I couldn't figure out how to say that I was incapable of creating letters the "right" way at the time.  It hurt to try. 

It also hurt to try tying my shoes or zipping a coat.  I invented my own method of tying shoes as well, and again, it wasn't until the fifth grade that I learned to tie them so they stayed together for more than five minutes.  In the first grade, a teacher - not even my classroom teacher - deemed it unacceptable that I was unable to zip my own coat.  She made me stay in at recess, trying time and time again to work out the mechanism of the zipper, fingers aching and tears stinging in my eyes.  This wasn't fair.  I was trying, I simply couldn't do it, why was I being punished for something beyond my control?

I am incredibly sensitive to sounds, smells, bright lights, and textures.  "So what?" the detractors may wonder.  "My kid cried when he had to have eye drops too.  That's nothing special."  But I didn't just cry.  I flailed, I shrieked, I hid under furniture.  I would keep it up for hours.  I couldn't sleep with a clock in my room, because the ticking kept me up at night, reverberating in my ears like a drum beat.  Fire alarms gave me panic attacks, and horrible paranoia for days afterward.  What if it goes off again?  What if I have to hear that terrible noise again?  When shoes pinched my heels or toes, or if the collar of a dress felt slightly tight against my neck, I couldn't stand it.  It was all encompassing, the only thing I could focus on, and I would wail in agony - yes, agony - until I was freed from the pain.  "My kid doesn't like loud noises.  My kid doesn't like certain fabrics."  Well, I am not your kid, and I guarantee you that my reaction was light years apart from his.

But by far the worst aspect has always been social interaction.  Asperger's is so frequently mocked as something losers on the Internet diagnose themselves with to explain their lack of social grace.  I would love for anyone who makes that claim to spend a week or so trying to interact with me.  I am absolutely unable to read facial expressions, beyond those of the family members and few friends I have had my entire lifetime to study.  And even then, it's difficult.  In college, I angered someone so much that he stormed out of the room, leaving me to stare blankly, wondering when I had made him mad.  I had seen no sign of it in the past twenty minutes, yet there I was, alone. 

I can't tell when I'm boring people, which is often, because I can't tell that they don't find my favorite subjects as enthralling as I do.  I can't tell when people want me to shut up or when they want me to comfort them.  I have trouble grasping on anything other than an intellectual level that others have thoughts and emotions, so how in hell am I supposed to read them?

Contrary to popular stereotypes about Asperger's as an excuse, I have tried to learn to better relate to others.  I no longer interrupt or yell to be heard.  I wait my turn and force myself not to drag every conversation to what I would rather talk about.  But I still screw it up, and it still feels like a punch to the stomach every time I realize that I've done something wrong.  I don't mean to sound rude, bored, or elitist.  But I'm told that I do.  Once a friend's mother decided that I was trying to show off how smart I was while I talked in the car, and cut me off with a cold "We're not as stupid as you think."  I went home and cried for the entire day, vowing never to speak again in front of that woman.  Growing up, I could never figure out my classmates, but they could read me like a book, and delighted in saying the right things to bring me to tears.

I was evaluated by my elementary school's special education department.  But I had no cognitive delays, and in those days, autism wasn't as well known as it is now, and Asperger's was all but unheard of.  The instructors told my parents that I was strange, but that they couldn't help me.  And so I endured bullying and alienation every day, and my parents endured report cards full of teachers noting that I had no friends and no idea how to make any.  There were no therapies to help me calm down and adapt.  There were no aides to make sure I stayed on task.  And there was no label to help me understand why things that came easily to others were near impossible for me.

There are many other things that set me apart.  I haven't mentioned my compulsive behaviors, irrational but powerful phobias, intense interests, or so many other factors.  I don't feel that I need to.  I dare anyone who has read and really listened to the words in this post to tell me that it's all in my head.  Tell me that I'm just like everyone else and I would not have benefited from today's autism programs and assistance while I was growing up.  Tell me that I've gained nothing from my label apart from an excuse for bad behavior.

And if you can't do that, can you tell yourself that increasing diagnosis and treatment for autism spectrum disorders is worthless and lazy?  If you can, if you honestly believe that the majority of ASD diagnoses are bunk, well, what does it matter to you?  How does it hurt you if children are labelled and given assistance?  In the end, it's none of your business, and you might as well stay out of it instead of alienating autistics and their families and allies further.

Wednesday, June 6, 2012

I'm Autistic: Let's Talk About It.

This is actually exactly how you should broach this topic.  Electricity and all.

In my last semester at Ball State I underwent evaluation from the school's educational psychology clinic.  The week I graduated, I received the results of that evaluation, and ended up with a diagnosis of three disorders: Asperger's syndrome, dsythymic disorder, and general anxiety disorder.

I haven't mentioned it here or anywhere else online until now.  Partly this is because I've yet to compile resources on autism spectrum disorders for this blog, as I've done with asexuality, feminism, and all the other subjects near to my heart.  Partly it's because I'm just now getting into the autistic community myself, and I've been preoccupied with graduating college and job hunting and everything else.  But I've also been avoiding the subject because, as with the time I was hesitant to bring up asexuality, I've been worried about the reaction.

It's not that I'm worried about mockery; I've grown accustomed to that after being the resident freak from kindergarten to high school, and the monster of a roommate I was freed from upon graduation was kind enough to introduce me to the special brand of torment that non-neurotypical people face. (Among other things, I was told I was faking for attention and asked when I'd find out for sure if I had "Ass Burgers.")  Anyway, I don't believe any friend or relative who follows this blog would treat me that way, and those are the only readers whose opinions would sting.

There is another type of response that I've been dreading, however, and it's one that's completely well-intentioned.

There is a tendency, when presented with a disabled/non-heteronormative/otherwise unusual individual, to idealize accomplishments that would be perfectly normal for anyone else.  What wouldn't register on someone's radar with an "ordinary person," such as being in a loud environment without having a meltdown, or dressing in a way that matches one's gender identity, or holding down a job, suddenly becomes brave and inspiring.  Actions that would be expected of anyone else are things that these societal outliers should be proud of and praised for.  And the things that set these individuals apart or cause them difficulty are viewed as things that should be pitied, or studied so they can be cured.

This treatment is well-meaning, and I'm sure that those who engage in it have their hearts in the right place.

That doesn't mean it isn't bullshit.

I am disabled.  I don't want pity, and I don't want actions that were normal before I was diagnosed to suddenly become inspiring after the fact.  Putting me up on a pedestal or holding me to separate standards because of AS is akin to telling me that I'm especially pure because I'm asexual.  My sexuality and my disorder are things I was born with.  I'm not brave for living the life I've been given.

This doesn't mean that I never want to receive compliments, or that I'll never do things worthy of recognition.  But I want my achievements to be judged on their own merits, not regarded separately because of my circumstances.  If I were to write a best-selling novel, I would want congratulations to be for writing a good and successful book, not for overcoming a disability.  If I ever become a role model, great.  But I don't want to be held up as an example only to those on the spectrum.

Please don't take this as a moratorium on the discussion of Asperger's with me. I have no issue discussing my developmental disorder, just as I have no issue discussing my sexuality.  Believe me when I say that it's far more uncomfortable avoiding the subject than it is talking about it.  There's a reason Bruce Banner was closer to Tony Stark ("Hey, you're a giant green rage monster, let's talk about it") than Captain America ("I don't care about your condition; I don't care about it so much that I'm deliberately avoiding the subject") in The Avengers.

And now that my obligatory comic book reference is out of the way, there are a couple of issues on the topic of language I'd like to bring up before I wrap up this post.  I plan to discuss language and autism in depth later on, or at least link to resources that do the same, but for the moment: please don't refer to me as "high-functioning."

I understand the use of the term "high-functioning," but outside of a medical setting, its implications are pretty unpleasant.  All too often, "high-functioning autistic" is shorthand for "acts like a normal person," as if autistics only have value when they can mask the symptoms of their disorder and blend in.  I can communicate orally and make eye contact frequently and I don't flap my hands.  That doesn't make me better or more healthy than someone who struggles with those things.

On a similar note, there are autism research organizations that talk about "fighting" and "curing" autism, which I find extremely uncomfortable.  My AS is as much a part of me as my love of writing or my hair color.  The idea of eliminating autism spectrum disorders is essentially the idea of eliminating the people who have them.  I don't want a world without us; I want a world in which society accommodates and understands us,  and helps us to thrive in a mostly neurotypical world without trying to exterminate what we are.  So please don't send me links to Autism Speaks or talk to me about raising awareness so a cure can be found.

Actually, just don't do any of these things, and we'll get along fine:




I Am Not Your Asexuality 101 Professor


Nadya Suleman, best known for having octuplets via in vitro fertilization, has recently made waves for appearing semi-nude in Closer magazine.  During an interview on the talk show Anderson after the magazine hit the stands, Suleman informed host Anderson Cooper that she is not interested in a serious relationship and that she doesn't "even touch [her] own darn self unless [she's] washing with soap!"

Given the controversy Suleman caused by deliberately having more children than she could afford, one might think any news that she's more focused on her family than garnering attention - Suleman states the magazine shoot was strictly for the money it would provide - would be well-received.  Instead, society is focusing on the really important issue here: the lack of sex and masturbation, much as they did with Tim Gunn's statement that he hasn't had sex in 29 years or Lady Gaga's decision to be temporarily celibate to focus on her career.

As a poster on one of my regular forums so sensitively put it:

"She's struck me all along as being asexual and incapable of adult intimacy. I think that's much of the draw of children for her."

Yes, it's the lack of masturbation that marks Suleman as an asexual, because all sexual people just can't get enough of the old five knuckle shuffle.  It's not, say, the interview Suleman gave stating that she's "not wired that way" [for sex].  It's because she's incapable of "adult intimacy" - which is apparently only fucking - and her desire for numerous children, which no sexual person ever has wanted, and which all asexuals are after, because they can only identify with prepubescent children.

I don't know if Suleman is asexual, celibate, or simply exhausted from caring for fourteen children.  I don't care, and I don't see why her personal decisions should be a big deal to anyone else as long as her children are provided for and no laws are being broken.  What I do care about are insinuations that asexuals are somehow broken or immature, or that masturbation - or for that matter, sex - is incompatible with asexuality.

But I didn't point any of this out.  Instead I played the part of the good little asexual advocate and pointed out that, actually, asexuals can masturbate!  And some of them don't even like children!

And then I was immediately reminded why trying to teach others the basics of asexuality is completely useless, because people continue to make clueless statements regardless.  As another poster so helpfully demonstrated (bolding mine):

"Ok, going to show my utter ignorance on the topic but isn't the idea of asexual having no interest or desire for sex at all. Masturbation surely indicates a sexual desire, or desire to have a sexual experience, albeit not with another person.

I don't know what you would call a person who enjoys sexual experiences but only alone but asexual doesn't seem the right term.

Ed to add: some quick reading seems to indicate the term 'autoerotic' is used."

Click this.

Nine seconds.  That is the amount of time it would haven taken to do some simple Googling and to avoid making a stupid statement.  Protip: If you know that you are about to "show your utter ignorance," don't do it.  I note that you managed some "quick reading" to dismiss the idea of asexuals having any sexual expression, but couldn't be bothered to type "do asexuals masturbate" into a search engine.

Hey parents!  Remember when your kids were toddlers?  Remember when they discovered they had genitals and wouldn't keep their hands out of their Pull-Ups?  Why do you think they did that, because they were hot and bothered over the child who shared the blocks with them at preschool?  Or is it possible that masturbation feels fantastic regardless of whether or not it's accompanied by sexual thoughts and desires?

That's without going into the difference between sexual attraction and sexual desire, and how it is possible to be aroused by or even fantasize about a person without wanting to have sex with that person.  I could go on, but I shouldn't have to.  I should not have to deal with sexual people sex-splaining my sexuality to me.

Did the poster know I was asexual?  Probably not.  Does it matter?  Absolutely not.  I should not have to write posts about why it's wrong to make sweeping generalizations about an entire sexual orientation without bothering to check Google.  I should not have to explain what asexuality is, and why it's valid, time and time again.  Just like bisexuals or lesbians or gays or trans people or biracials or the disabled or any other minority should not have to educate the ignorant masses.  This should be common sense.

I've stated in a previous post that I'm done trying to justify my identification as queer.  Well, I'm done explaining asexuality to the willfully ignorant.  Not going to listen to me the first time around?  Then do your own research.  I'm not your asexuality 101 professor, and I shouldn't have to be.

Wildly Screwed Up Worldviews: If This Is Your Attempt to Represent Me, I'd Rather Stay Invisible


On January 23rd, the popular medical drama House aired a new episode entitled "Better Half."  The subplot of that particular episode revolved around a patient of Dr. Wilson's who came in for a bladder infection, and during the appointment, revealed that both she and her husband identified as asexual.  The promotional ad for the episode mentioned asexuality, causing asexuals across the Internet to hope that the show would accurately portray asexuals: not broken, not sick, just an orientation as valid as any other.

And then the episode aired, and every asexual who had even the slightest hope that the show could portray them well got a kick in the teeth.

I'm coming in late with a response, because I don't have cable and I don't follow House (and I'll never watch another episode after this).  The gist of the story is that Dr. House helpfully informed the audience that anyone who doesn't like sex is either "sick, dead, or lying," and bet Dr. Wilson a hundred dollars that he could prove the woman had a medical problem.  Nope!  But her husband did: a brain tumor near his pituitary gland that destroyed his sex drive.  House explicitly states that this is the result of a tumor, and not a legitimate orientation.

As for the man's wife?  Well, she was just lying about not having a sex drive to please him, of course! Because asexuals don't exist.  Dr. House takes another victory under his belt and brags about "correcting two people’s wildly screwed-up world views. Not bad for a day’s work!"

I know many, many other asexuals have already responded to this disgrace on their own blogs.  I know that they have contacted both the screenwriter of the episode, and the FOX network airing the program.  And I'm sure they have laid bare their concerns and dismay far more eloquently and much more calmly than I ever could.

But I'm still going to talk about it, because the only thing I find more distasteful than the episode itself is the explanation that the screenwriter, Kath Lingerfelter, gave for the episode:

I am trying to communicate with several of the people of the asexual community who were displeased, so forgive me if I repeat myself. I did a lot of research on asexuality for the episode. My original intent was to introduce it and legitimize it, because I was struck by the response most of you experience, which is similar to the prejudice the homosexual community has received. People hear you’re asexual and they immediately think, “What’s wrong with you, how do I fix you?” I wanted to write against that. Unfortunately, we are a medical mystery show. Time & again, my notes came back that House needed to solve a mystery and not be wrong. So in THIS CASE, with THESE patients, it was a tumor near the pituitary. But I hoped I could (now it seems unsuccessfully) introduce asexuality to the general public and get them asking questions. All they need to do is one google search and they can see for themselves it’s a real community of great people. Originally, part of my dialog included thoughts about whether as a species we’ve grown past sex. Any time we tackle a subject, we risk the possibility of not doing it justice. I apologize that you feel I did you a disservice. It was not my intent.

No.  I'm sorry, Kath, and I'm sure your heart was in the right place, but this doesn't make up for the damage done.  You "apologize that [we] feel [you] did [us] a disservice"?  This isn't about feeling.  This is about a popular show on a major network completely invalidating a sexual orientation on prime time television.

You're correct in your statement that many people assume something is wrong with asexuals.  Many more people have never heard of asexuality, and so Dr. House's dismissive attitude toward asexuality on a program watched by millions across the globe was their introduction to the orientation.  And odds are that now, many of those people will not consider asexuality a valid orientation, because over the course of forty-five minutes, House "proved" that the whole thing was either a hoax or an illness.

I understand your claim that it was only in THIS case, with THESE patients.  But unfortunately, that doesn't cut it when what you're talking about is something that most people have never heard of.  Now, thanks to this episode, they have heard of asexuality, and what they've heard is that asexuals are either sick or lying.

While I'm sure that the powers that be played a hand in making House disprove asexuality, the writing for the episode still shoulders some of the blame.  If there has to be a medical mystery, and House has to be right, then make a character that is asexual without making asexuality the mystery that has to be solved. I'm glad that you were concerned with the prejudice that asexuals face, but as the plot stands, it appears to justify that prejudice

Kath also had this to say about the episode:

Asexuality is a new topic for me and definitely one I find fascinating. It is a subject I would like to continue to explore here or ..on future shows I write for. I think it speaks to where humans are now and where we are going. I will do my best in the future to do it justice. Thank you for feedback and please share any and all thoughts.

I'm glad that you find my orientation worthy of writing about.  But asexuality is near to never represented in the media (and look at the treatment it received when it did appear). It's an orientation that is dismissed by many of the people who've actually heard of it, even in medical and LGBTQ communities, as a physical or psychological illness, the one that is considered frigidness, selfishness, or even sinful, in the eyes of those who believe it's our duty to "be fruitful and multiply."  And representations like the one on House are not helping to counter these dismissals.

I also cringed at your comment about asexuality speaking to "where [humanity is] going."  All too often, asexuals are stereotyped as mutants, like we're the X-Men.  We're told we belong in science fiction, alongside HAL 9000 and the Enterprise.

I consider myself lucky to have faced relatively little discrimination as an asexual, and I have still been told that I'm lying, that I'm selfish, that I'm sick, that I'll grow out of it, that I won't know what I'm missing until I get laid.  I've had members of the queer community tell me that I don't count as one of them, and that I was oppressing them by considering my orientation a part of the queer movement.

Asexuals are constantly under pressure from the media, society, and even their loved ones to seek medical attention.  They are told there is something wrong with them that must be fixed, that they're evil prudes trying to lure innocent sexual people into a frigid relationship.  They are told that their marriages do not count because they are unconsummated.  And now, that your representation of the orientation has appeared on television, they are told that the media does not believe they exist, and that they will most likely never have positive representation on cable.

Did you consider, while writing this episode, that someone struggling with their sexual identity may see this episode and take it as proof that they have to force themselves into sexual relationships they don't want to be "normal"?